Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Special needs chat, Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.

Gastrostomy support thread no.2! Tubefed children support thread

(973 Posts)
Isitme1 Sun 25-Nov-12 14:44:35

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

X

2old2beamum Tue 02-Apr-13 20:54:11

trace2 just a short post but when DS had a mini we always kept a spare mini- button in the fridge it was less floppy and with lubricant it slipped in easily. Also always kept a naso-gastric tube that we could slip in to stop the hole sealing off completely if else failed an old trick (old paediatric nurse here grin) Hope your DD is ok now.
You other scallwagsy will post more tomorrow,
Oldsneeze spring cleaning I have 8 bloody bedrooms sad

Don't ask me to do them 20ld I don't LIKE cleaning lol. grin Today was doing anxiety cleaning in giddy s house as its a bit of a tip untidy due to new baby chaos. Anxiety as they took baby Alex to A&E as he sneezed, puked and was too drowsy to feed shock. Major panic from DD 8 hours at hospital, Chest X-ray and bloods....then the little bugger woke up and fed and was bright as a button! Bloody typical as I was set for a restful day with no babysitting! Anyway DDs kitchen is spotless grin but we are all SHATTERED.

No idea about buttons, that's yet to come but no constipation with DGS. 2 poos today and they really smell because of my lovely korma curry blend. DS doesn't sound clear to me isitme. sad

2old2beamum Thu 04-Apr-13 21:50:52

oldsneeze you mean you can't come and do my spring cleaning shock[anger] Well big huff. Anyway I am glad Jess has a sparkling kichen (I cleaned oven today smile) How are they doing? Hope Elliot is not finding it too hard bless him and Jess is taking it easy.

DGD hope everything is ok with you and your little brother is on the mend. How is DGGS is his tum any better?

Here things are chugging along OK a few seizures thrown in for good measure Big problem with DD's wheelchair bloody wheel fell off so am quite nervous about venturing out but they are coming out Tuesday.
On the upside DD3 had letter today to say she had been awarded ESA in the support group YAY. Mind you she must be one of the few people to be sacked from a voluntary job sad

Hope you and your scallywags sleep wellXXX

PS oldsneeze cleaning stuff under sink grin

.....totally ignores cleaning stuff!! grin

Jess a bit on the knackered side. Her wound (10 days) is a bit sore still and still a bit of pain, but the high of it all being over and home is wearing off and tired with night feeds etc. is taking its toll, baby alexei is such a good baby and does the sleep thing which freaks her out! Its so exhausting being a new mum and her DH insists on doing all the DIY jobs her never gets time for...so its drill drill, bang bang. Think he missed the point of being there to ensure a calm and peaceful atmosphere and wait on her hand and foot help out with babe . He does do that to be fair but he is a typical man, got to be mending stuff!! grin grin bit ranty there as it gave me a headache!

Good luck with the wheelchair wheels. Very unerving with dodgy wheels! can see it running down a norfolk cliff with you chasing it! My DSs ex girlfriend also got sacked from a charity shop. She was not very nice at all and very dim but without the SN excuse, just greedy, grasping and horrible angry

night all. sooootired.

2old2beamum Sun 07-Apr-13 18:02:44

Cleaning FORGET IT oldsneeze it will be here when we are gone Not having a good day here. OF decided to pollard tree in garden so 2 Down's lot went to help him leaving poor old me to cook dinner, do immunoglobulin infusion change 4 shitty nappies (movicol day) Yet another exploding colostomy bag but Lottie (youngest) surpassed herself bless (scrubbing contents off carpet sad)

Anyway how is Jess I am not surprised she is Knackered even a a normal delivery swiped me out, adoption was easier but nerve wracking but wonderful smile

Bit worried about Itisme (DGD) has been very quiet hope all is well
XX

Yes. Hope isitme is OK. little DS was not right with his tummy, hope not obstructed shock Maybe they are just having a relaxing weekend and we are just old worry worts grin

You have had a horrible weekend by the sound of it. Cant the colostomy situation get sorted by some kind expert? Sounds awful for DD but bless her for helping. Think Jess is OK. I now get weekends off (until DS calls me to mend/decorate his house!) Refusing til it warms up. Have planted up half £108 worth of plant plugs for the garden and they are stacked up in the living room as still frosts in april!!!! Must say I am exhausted listening to your jobs, bit of cleaning is a doddle.

Was snipe (you know what that is??) bidding on ebay for orthopaedic sandals for DGS, nearly new as our poor CP kids dont get much wear out of their expensive footware grin. Anyway looked on the piedro supplier site and ended up getting nicer new ones for £6 more than they finally went for! Sometimes people go bonkers on ebay and dont use common sense <shaking my head!> You probably havent time to peruse ebay, so I will shut up grin
night all xx

Giddypants Mon 08-Apr-13 11:16:45

Can't believe those two pictures you have on your profile, elli and Alex look like twins!
Just had the midwife out, all ok Alex now discharged he was weighed and has put on 300g taking him to 7lb 4oz, at this rate I'll be a size 8 by next week!

Still looks like a tiny doll smile

2old2beamum Mon 08-Apr-13 22:16:13

Glad to see you again Giddy If you are a size 8 your old Mum will no longer be able to call you plump smile

Am so glad Giddy looks like a tiny doll grin

Seriously glad things are getting back to "normal" Things here are plodding along today quite nicely
X

Isitme1 Tue 09-Apr-13 10:55:46

Found you!!
Lost the thread for a while.
Will come back in a bit for an update.
Dh is back lol. Been busy busy busy.

Ds has had a poo
X

Isitme1 Tue 09-Apr-13 20:19:33

Neither love cleaning or hate it.
Has to be done.

Hope dc are better now granny

Giddy thats really nice to hear hes put on weight.

Sneeze how are you coping with 2 dgs lol.

Ive been having braxton hicks again. Past2 nights at the same time.
Ds has had small semi solid bms.
Hes got irritation on the inside I think as theres coffee ground stuff coming out of tube.
Little bro has bronchiolitis and ds has started coughing. :|
Go dietitian over tomorrow will see what she says
X

2old2beamum Tue 09-Apr-13 21:01:49

Glad to see you again DGD Phew. How many weeks are you now? Braxton Hicks do seem to come earlier with 2nd 3rd etc pregnancies.
However if contractions are long, strong and sustained (so my lectures told me) get your bum into hospital Hope little brother is OK there are so many bugs around sad Glad about poo smile

Hope all the rest of you scallywags are OK

Isitme1 Wed 10-Apr-13 10:46:04

Little bro is not too bad thanks.
They just seem to be at the same time in the evening. Bet you I go into labour at that time lol. It has me on my arse for around 30-45mins. Rock hard tummy with back ache but only few of the bh and stay hard in between (sounds dirty lmao)

I kept banging on abou5 ds being weighed without clothes but nooo she didnt listen. However I know that his clothes plus nappy weigh over a kg so imo hes still 11.5
Back soon x

Isitme1 Wed 10-Apr-13 16:05:47

Ds wanted the phone lol.
Last time he was weighed with and without his clothes in the same day he was a kg lighter without. So imo hes 11.5kg so hes neither officially lost or gained.

How is everyone? X

2old2beamum Wed 10-Apr-13 17:17:37

I must admit DGD I personally do not stress about weight as long as they are well hair shiney nails strog skin good. dd is nearly 8 and weighed 17.1K fully dressed. Dietician worries far more than me shock

Hope everyone is fine, me I shall jump off the pier if I see one more blob of snot (knowing my luck the tide will be out!!) grin

Thank heavens the snot season is coming to an end! We are just having bogies now, ripe green ones. grin

Elbear weighs 15 kg at 4 1/2 so still got a long way to go, but as u say he is pretty healthy. Eating very little orally now probably as j so busy with alexei. He is doing a good job liposuctioning the fat cells away but a long way to go yet judging by the size of her new nursing bra...36F! shock. This is my dainty 32a child of yesteryear! A stone gone so far ....bfing fab for weight loss! Jess had scary Brixton hicks and said resting, warm bath etc eased them, but not nice and scared her.

We sadly haven't got a pier anywhere near. Whitbys got Count Dracula lurking about apparently confused

DGS has been assessed for RDA and looked freaked by the horse but didn't scream and sat on its back. Horse was lovely and so calm.

Love to all xx

2old2beamum Wed 10-Apr-13 21:18:30

Hi Oldsneeze please don't let Ellen 27 DS know you live near Whitby she, as well as being an ardent Royalist is a Dracula fan and loves the museum (old fart is a Scarboroughian) so we visit to see his relatives
Please do not speak about Jess being lumpy what do you weigh?
RE LO's weight Annabel was 17K at 4 years But is now 130cms and weighs the same. What can we do ?

Sleep well love to all as well XXX

Isitme1 Thu 11-Apr-13 08:57:16

Wow. Your right granny. Will keep my eyes on his nails then lol.
Sneeze and giddy like I say to lil sis who has just had a baby- takes 9 months for belly to stretch so will take at least 6 weeks to become normalish if that makes sense.
Bf is good though mum is still doing it and is thinner than she was before getting pg! Just hope this one can tolerate it this time as ds couldn't.

X

grin jess not lumpy as weight is falling off with the bf liposuction training regime. Lost 1 and half stone in about 2 weeks! I weigh 8 st 9 but am one of the 7 dwarves at 4.11 !!!!

Think annabel is 7? That weight is really low sad. Is it to do with her immune system do you think? Elliot is putting weight on with blended diet but is still a sicky child. A lot is behavioural though. We do super high cal blends. It's very difficult to fatten up a poor oral eater though.

Please can we have some sun now, I am so tired of this crap weather.

Isitme1 Thu 11-Apr-13 20:13:36

I defo want to try bf then lol.
Ds came up to bump today while music wss on and started to gently shake bump and he was saying baby dance dance lol.

Lil bro in hosp with lobe pneumonia!
Hes been on oxygen since 2 and can't keep levels up himself.
Ive been in with him as I have the experience of how to deal with a shitty dr lol.

X

2old2beamum Thu 11-Apr-13 21:19:39

What a lovely aunt you are, my home grown DC's care but are very busy with their own lives but they do not live locally. Keep up the good work, your mum is lucky to have you

Oldsneeze poor old Annabel is nearly 8 and I am sure it is her immune system and/or her syndrome. We are seeing a gastro next month who I really respect (looked after Stefen until he died) It is lovely to use his name. But with her ladyship she puzzles me confused
What a shortarse you are mind you my birthmother was 4.9 GF was 4.11 GM 4.10 ME I am 5.8 but Pa was 6.7
Glad Jess is doing Ok breast is definately best Listen DGD Granny midwife speaking.
Sleep well you scallywags smile
XX

Isitme1 Fri 12-Apr-13 10:15:36

Granny in sure you mean big sis not aunt lol.
I hope the gastric can give you some more info.

Granny I had pain in the bottom right of tummy this morning for a while. Made me cry. Dh was in the shower and by time he was out it had gone hmm and id washed my face so he didnt realise but what could it of been. It wasnt bh as it really hurt but wasnt all of bump.
How is everyone?
X

bigbluebus Fri 12-Apr-13 12:59:09

Hi everyone. Haven't posted on this thread for a long time.
I was just wondering, those of you who have DCs with gastro/mickey held in by balloon, are you all trained to change them yourselves/replace in an emergency?
I was shown how to do it and had done it a couple of times, but then didn't do it for a long time as school nurse/respite nurses did it. When DD turned 18, we moved to adult services and I had no one to do it, and was a bit wary of doing it without someone with me, as we live a long way from the hospital - so would panic if I took old one out and couldn't get new one in. District nurses didn't know how to do it, and the agency nurse who looks after DD didn't know either. Fortunately,school nurse came out and supervised me - it all went fine, so I was panicking for nothing really - but we all need a bit of re-assurance sometimes!
Thankfully District nurses have been for some training and next time it needs doing, we are all going to do it together - hopefully with the PEG nurse from the hospital - who I didn't know existed. Adult Health services are a very different beast from Paediatrics - well they are in this area anyway!!!

bigblue. I've heard changing to adult services is a big culture shock after all the help you get from paeds generally. DGS still 4 so not looking at that hurdle for a long while. DGS still has a PEG and Jess knows how to put an emergency catheter in to stop the hole closing and I'm pretty sure folks change mickey buttons etc. we have a gastro nurse who is so helpful. 2old keeps it in the fridge I think to make it stiffer (blush sounds rude!) but you know what I mean grin

isitme. bfing is amazing for getting back your figure. Jess is still apple shaped but the bits on top and the leg bits are reappearing and slimmer grin Not bad after a c section. Hope little bro is OK, that sounds awful in a small babe. sad

20ld. Yes very shortarsed am I but long since past caring about it grin. You were lucky your height fell nicely between all the extremes in your parentage and didnt opt for short or tall grin Dont know why I am such a shortie, my parents were pretty average confused Stefen is a lovely name, loss of a child is something that should never happen but I hope the nice memories are a comfort to you all xxx
kate

Giddypants Sun 14-Apr-13 03:28:24

Isitme, this pain you had was it a sharp shabby pain like a stitch? Really quite intense but goes away after a bit? If so I had the same periodically, I mentioned it to the mw who said It was where my uterus was stretching.

We're on second feed of the night, just need to keep waking him to finish off lol, he's a little sleepy head, but so glad he knows the difference between night and day. Think ds2 has a touch of the colic, it's not overly bad (touch wood) just a bit gripey after having a feed, infacol seems to be working, I remember having to walk around with el in a sling until 4 am before his colic would subside, not fun times!

Poor ds1 has impetigo on his chin, thought it was a cold sore for nearly a week but not been in much pain with it, saw the dr on Friday so have some cream for it now, must admit its looking better already.

I think incoming down with a cold, have a really sore throat, just hope I can build some antibodies before Alex catches it.

2old sorry about stefen, agree with mum, it's a lovely name, as is annabel, but what an enigma! But glad she has you to look after her x

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now